Monday, July 15, 2019

You Have to Find Hope

Friday's post was pretty difficult.  I think it shows how defeating it can be when we watch our special person struggle.  

I will be the first to admit that I have a pattern to how I handle the emotions of Tyler's struggles.  Once the day's battle is over, I become very introspective.  Usually this leads to a short period of feeling extremely sad and in despair.  As sad as I become, I have learned even then to keep a certain perspective.  I remember that every extreme low (and extreme high) is only temporary.  I also remember that Tyler and I will always have each other and that regardless of how bad things could ever get, there is nothing more important.  

One point I want to be clear about, I think as long as all of us know how to keep proper perspective, it is very important to follow through with those emotions.  After I wrote the last post Friday night, I texted my Nephew and his wife and invited them over to swim, have a pizza, and drink a few beers.  We shared some laughs and then we sat around the fire pit and exchanged woes.  His wife is experiencing some family-related problems on her side of the family, and my Nephew has some issues happening on his side as well.  It seems we all have sadness we are carrying around.  By talking about them we validated them and gave them a place in our order of things.  We certainly didn't solve anything, but we allowed ourselves to open up and talk which is worth its wait in gold.  

If you find yourself unable to deal with your emotions, or you are having thoughts of harming yourself or someone else, please make sure to contact a doctor or crisis prevention specialist right away.  

The remainder of the weekend was spent with family and church.  I did a little power washing, some grilling, and visited some friends who love to play cornhole and have a good time.  Does it make everything just go away?  No, of course not.  But each person who gives a word of encouragement, or a prayer, or a hug, or even just asks how we are doing is making it just a little easier to continue moving forward.  Instead of being overwhelmed with the helpless feelings, I get to also feel the love of others.

So to Dan, Megan, Mom, Dad, Pam, Andy, Mike, Molly, and Rob....thanks for making me laugh....thanks for needling me...thanks for the pats on the back and the hugs.  Thanks for sharing your trials with me, and listening to mine.  And thanks for just being there the last few days.  It placed me back on my feet and ready to keep going.

Be well and God bless.   Tom

Friday, July 12, 2019

Little Boy Lost

I would love to be able to spread happy news.  I want this blog to be about improving our lives and how others can do the same.  That wouldn't be the reality of what we do as caregivers.  Unfortunately we seek answers to questions we don't understand, and once we think we have an answer, the questions change.

Then there is the heartbreak.  I sit before you with this sadness that I cannot begin to describe.  Its a sadness that is consuming to the point that it drains me emotionally, mentally, and physically.  I'd rather deal with anger, at least anger makes me feel motivated to fight.

We were able to get an emergency appointment with Tyler's psychiatrist today on short notice.  I was able to make myself available whenever the call would come in with a time.  At about 10:30 am I was told we could be seen at 12:30 pm.  For this appointment I would have attended at midnight if I had to.  Even if it were being held on the moon.

The appointment went fine.  I walked away feeling as though we had a plan of action.  What made me feel so incredibly sad was looking at Tyler's demeanor throughout the meeting.  He was withdrawn from everything.  It looked as though he wanted to put himself a million miles away.  He barely acknowledged me.  If anything in the world ever pulled him out of a dark place it was our relationship.  The only time I ever saw him like this was when he would be hospitalized and he would withdrawal as a defense mechanism.  I was able to get very little feedback from him at all.  He left the room when it was over without even a glance in my direction.

Is his demeanor because his medications have put him into a sedated fog?  Is he depressed and feels that I have abandoned him?  Has he lost the will to fight for himself and simply wants to be left alone?  Or is there a long term medication effect happening that is altering his mindset?  Nobody can tell for sure.  The world of the non-verbal doesn't allow for many clues.

Our hope is that by reducing a medication that has the possible side effects of sedation and confusion he can get some clarity.  Maybe he will feel more energy or more aware of his surroundings.  Maybe he can get some spark back.  Its a guess basically, even by the experts, but this is what the team has decided to try.  For his sake, I hope this clears some cobwebs so that Tyler can shine through again.

Be well and God bless.    Tom

Saturday, June 15, 2019

Fathers Day Song

I've been so many things
From a bastard to a King
Spent days that would make you cry
And others to make you sing

One too many challenges
Traveled one too many roads
My bones became too weary
Carrying one too many loads

Above it all you needed me
Regardless of the rest
You only knew you needed me
And you had to have my best
You had to have my best

Empathy is just a slogan
That's sold without a thought
We will stand right behind you
Til the next time we've been bought

We care for the least among us
As long as we See it pay
When it doesn't fit the right agenda
We quietly make it go away

Above it all you needed me
Regardless of the rest
Even when society failed
You had to have my best
You couldn't live without my best

Even the heroes found among us
Are tied by kryptonite
Red tape and limitations
That keep us up at night

ISPs and meetings every month
Psycho-babble that fill our brain
We gather up in meeting rooms
Just to say the same shit over again

Above it all you needed me
To keep a level head
When the questions got too big
I'd answer them instead
I had to answer them instead

So to you my baby boy
I pledge to always know
Regardless of the world outside
How to keep us all in tow

After all it's only you
That needs me to come through
The world may try to break us down
But in the end it's only you
In the end it's me and you
All we have is me and you

Monday, June 10, 2019

Still Struggling

As noted in a previous post, Tyler is currently struggling with his ability to control his behaviors.  We hate it for him, and we hate it for everyone else that is trying to help him.  It's a helpless feeling knowing something is wrong with your child, and not being able to make things better.  Its worse yet when the people trained to evaluate and calibrate his medications appear to be sleeping at the wheel, or worrying about bureaucratic details more than serving him as they should be.  I'm sure every special needs parent has had those moments where they want to grab someone by the collar (I'm being kind) and shake them while screaming "I don't give a damn about anything else other than making my child better!"

The girls and I decided to spend some time with him after church yesterday.  We had him and his caregiver meet us at the park, and we picked up subs along the way.  His mood in church seemed pretty good, although he seemed tired and nodded off during the service. The park was busy but we found a nice shaded table to sit and eat.  It was beautiful out with ample sun and a breeze to keep everything nice and cool.  We were all talking about how he was doing when I suddenly got a hard kick to the leg.  It startled me more than anything. Its highly unusual that he ever strike me, and this was completely out of left field.  We went from calm to red alert in a second.  My reaction was to get him right up and start taking a walk....he always loved to walk.

At this point I found myself falling into every old habit I ever had.  I watched every movement he made looking for a physical sign that would tell me what is wrong.  He wasn't cocking his head back so there is no danger of his shunt malfunctioning.  He isn't pushing his belly either.  But his balance is extremely off.  I also became concerned at how quickly he tired, as he always outpaced me with no problem.  I decided it was best if we shortened the walk and allowed him to head back home.  But not before one quick selfie...

I find myself in a familiar mixture of worry, sadness, and frustration now.  Its amazing how quickly I can be taken back to those emotions.  We all made so much progress over the last 2 years, and now it feels like its all gone.  It will probably sound juvenile to say this, but it just isn't fair.  Tyler has had more than his share of difficulties in this world and he deserves to be content and at peace with his surroundings.  Something which seems so little to ask shouldn't be so hard to maintain. It feels like all 4 of us deserve to someday have that peace of mind that continues to merely come in temporary periods.  

I know I have to dig in and fight for him.  I need to make some calls to his doctors and start pitching fits until something is done with his medications to help him get through this.  It just feels like today I'm trying to run with feet of clay.  I want to be angry so that it motivates me, but I feel more sullen and defeated.  

Tyler needs me.  Tyler needs those around him to rise up when he cannot.  There has to be actions made on his behalf and I swore to him as his Dad and his Guardian that I would always be the last line of defense for him...a line that would never break.  

Its time to pick up the shovel and start digging.

Thursday, June 6, 2019

Summer Swimming Safety

This is the season for many fun activities, going to picnics, cookouts, sports, and swimming.  I am one of those people that loves the summer and tries to be outside as much as I can.  For those of us living in the Northeast, its a seemingly short summer season that requires us to take advantage of every warm sunny day we get.  My daughter is the same way, asking every day since April if she can get into the pool.  Most kids are drawn to the water like moths to a flame.  Special needs children are especially drawn to areas of water.  With this in mind I wanted to talk about water safety for EVERY child in the hopes that raising awareness can lead to an amazingly fun, and safe summer.

This post is dedicated to Judah Levi Brown.  I learned about Judah through an article which appeared on Facebook, from TODAY Parenting Team community site.  I was immediately touched by the words on the page, coming directly from his mom Christi's heart.  I asked if I could share her message with my readers, and she graciously agreed.  This is Judah..

Judah reminds me of my daughter where it involves water.  Most of the time I have to drag her out of the pool even when she is shivering or her skin looks like a wrinkled shirt.  And while reading the article I found myself nodding my head, agreeing with all of the things that were done to ensure his safety.  Swimming lessons...check.  Attentive adults...check.  Floating device....check.  Practiced rescue techniques....check.  I've covered all of the same angles with my own children.  Being a loving, careful, attentive parent should really always be enough to protect my child.  Until fate finds a way of unfairly and unjustly robbing us of what we work so hard to protect.

Judah's family was enjoying a BBQ with friends, and the kids were all enjoying the pool.  Judah had done as every other child does, hopped out of the pool, sat, and then decided to get back into the pool.  And in the transition from swimming, to drying, to sitting, to getting back in, he was no longer in his float device.  In a moment more, he was gone.  Despite quick reactions and attempts to keep him alive, Judah was gone.

Because swimming is such a fun activity associated with friends and picnics and happy things, the dangers lie silently in the background.  The truth is that drowning is the #1 cause of death for children ages 1-4.  It is the #2 cause of death for children ages 4-14.  And that boys are 77% more likely to drown than girls.  For every child that dies from drowning, another 5 are treated in emergency rooms for nearly drowning.  

For special needs children, the statistics are even more frightening.  Children on the autism spectrum are TWICE as likely to drown as typical children.  In a study between 2009 and 2011, accidental drowning accounted for 91% of injury related deaths of autistic children ages 14 and under.  An estimated 90% of drowning deaths occur while the child is being supervised.  That statistic is stunning.  There is likely a deadly combination of curiosity and lack of danger awareness that attributes to the increased risk.

So the question do we make proximity to water as safe for our children as possible?

  • Teach your child to swim.  With that, teach them what to do if they fall in or get into trouble in the water
  • Know your child's personalities and abilities
  • Underestimate your child's swimming ability.  Assume that any child will panic or forget the fundamentals if they run into water trouble
  • Maximize available supervision.  As quickly as an accidental drowning can happen, even the most attentive adult may not be able to track every movement
  • Understand that drowning is generally silent.  It is NOT like you see in the movies where a person splashes and screams.  A drowning child may not appear to be in any trouble until they are under the water
  • Make your pool secure.  A pool should be inaccessible from all sides, including a secured ladder
  • Remove toys from the pool when not in use.  Floating toys are enticing for children to reach for
  • Check for drains and other entrapment hazards
  • If you lose sight of your child check bodies of water FIRST
  • Learn CPR.  The sooner a drowning victim is given CPR, the better their chances of survival
 I'd like to express my sincere gratitude to Judah's family, and the Judah Brown Project for permission to share Judah's story.  Please visit the website at 
To Christi I would like to say your article was amazing, heartbreaking, and inspiring.  Thank you for bravely sharing your story and helping to save lives.

Be well and God Bless.   Tom